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Nonprofit Overview

Mission: The Oral Cancer Foundation is a non-profit 501c3 charity that works to provide information about this disease to the public and to medical and dental professionals, advocate for patients, and provide support services to them. OCF operates the world's largest real time, patient-to-survivor interactive support service via the web, and the foundation's main information web site, which contains thousands of pages of information, receives over 24 million hits per month. We are also sponsors of research, primarily in the area of detection mechanisms that facilitate the discovery of the disease at early stages when survival rates are the highest, the relationship of the HPV virus to oropharyngeal cancers, and immunotherapy treatments for oral and oropharyngeal cancers.

Results: *WINNER OF THE CANCER FIGHTERS AWARD from GNP as the BEST SMALL CANCER NON-PROFIT in AMERICA*
Oral Cancer Awareness Month – April
Oral Cancer awareness in the American public is low. Approximately 49,750 people in the U.S. will be newly diagnosed with oral or oropharyngeal cancer this year. Dental professionals are often the first line of defense against oral cancer, through the process of early discovery. While smoking and tobacco use are still major risk factors, the fastest growing segment of oral cancer patients are young, healthy, nonsmoking individuals due to the connection to the HPV virus. We cannot stop this very common virus from spreading; our only hope to save lives is with professional involvement and public awareness of the benefits of a preventative vaccine. This is your opportunity to get involved and give back to your community in hopes to raise oral cancer awareness and the need for early detection in order to save lives. Together, we have the opportunity to make a difference in the world of oral cancers. Please join us.
Rodeo - Tobacco Outreach - "Be Smart. Don't Start.”
Rodeo cowboy, Cody Kiser, and cowgirl, Carly Twisselman, have partnered with OCF to spread a simple message to the youth at rodeo competitions, “Be Smart. Don’t Start.”
The foundation is a big believer that in order to solve problems, you have to become engaged where the problem lives. Kids look up to athletes, not just in rodeo, but major league baseball and elsewhere as “heroes” that they would aspire to be like. Unfortunately, no hero is ever perfect. OCF has begun to program to put alternative role models out in the world of rodeo cowboys athletes, with the intention of reaching young people before they make addictive choices that will harm them later in life. With Cody and Carly’s support, we expect to have a larger presence in the rodeo world and reach many more young people with our anti-tobacco message.
Be Part of the Change:
The RDH community is uniting to be part of the much needed change in reducing the historically late discovery of oral cancers. With their commitment to performing oral cancer screenings and being the first line of defense, they have the opportunity to find cancer in its early stages. Early discovery and diagnosis, yields better long-term outcomes, and lower morbidity to those who undergo treatments.
In addition to screening patients they see in their daily practice, we have partnered with hygienists across the county to build screening teams to perform free oral cancer screenings in their community. A combined effort between professional engagement and public awareness is essential in order to raise awareness of this silent killer and educate the public about the importance of an annual oral cancer screening.
The foundation Screens tens of thousands of individuals each April, oral cancer awareness month through are partners in the medical and dental community

Target demographics: While historically the majority of people are over the age of 40 at the time of discovery, oral cancer does occur in those under this age. It is also now confirmed that in a younger age group, including those who have never used tobacco products, have a cause which is HPV viral based. The human papilloma virus, particularly version 16, has now been shown to be sexually transmitted between partners, and is conclusively implicated in the increasing incidence of young non-smoking oral cancer patients.

Geographic areas served: USA

Programs: Research - Understanding the Implications of Human Papilloma Virus Infection - particularly HPV 16, which is now responsible for the fastest growing segment of the oral cancer population. For over a decade OCF has funded core science which has helped us understand this new etiology. Work that has elucidated demographics, transfer mechanisms, future trends of the infection, treatment response, adn more have been produced by our decade long collaboration with Dr. Maura Gillison and her team.
Advocacy - OCF was a leader in the effort to expand the use of the HPV vaccine for cervical cancer to young boys, testifying at the CDC vaccine boards over three years. With strategic partnerships formed with other organizations such as the American Academy of Pediatrics, the foundation finally achieved this goal.
At the NIH, we have advocated for clinical trials in the area of head and neck cancers that our science board deemed urgent. These have included research to determine if the HPV protective cervical cancer vaccines would work as well in other HPV cancers such as HPV16+ oropharyngeal cancer, which is the fastest growing segment of the oral cancer population. OCF's founder Brian Hill sits on two NIH oversite committees, one on Immunotherapy in head and neck cancer at the NCI, the other on Long-term outcomes or oral cancer treatment and the NIDCR. Through these positions, we not only stay abreast of the current thinking in treatments and are able to disseminate that to our followers and the public, but we are able to influence research directions as well.

Community Stories

351 Stories from Volunteers, Donors & Supporters

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In 2006 at age 50, my life was a freight train; roaring forward, very fulfilling & busy. I was 50, felt like I was 30, worked like I was 20. Then, my freight-train life ran head-long into a brick wall.

The "toothache" I'd sought treatment for was stage IV cancer in my jaw. Aggressive, very poor prognosis, and treatment, if successful, would be life-changing. Disfiguring, horrible suffering during treatment, with only slim chances of survival for more than a year or two afterwards.

I've always been a cautious optimist, but there seemed to be very little to be optimistic about. Very low survival rates, horrific treatment modalities, nothing about it sounded in any way appealing. Did I really want to go through that? Was there any POINT in going through that if all that would happen is a short extention of my life, filled with even more misery? I knew next to nothing about oral cancer, and I was terrified.

I knew I had to get to know my adversary, intimately, if I was going to fight. It didn't take long before I stumbled across what would become an integral, important, engaging source of understanding, advice & enormous compassion & encourgement; the Oral Cancer Foundation.

From the first moments, I became part of the OCF "family", and they became a part of mine. Within hours, I was talking to people about my deepest fears and feelings; total strangers earlier, and now close confidants.

It's been said that the only person who TRULY understands what a cancer patient goes through is another cancer patient. Even more important, if that other cancer patient suffers(ed) from the same type of cancer.

The OCF gave me the most important part of the "survival equation", and the part that was missing; the OCF gave me HOPE. I learned and came to appreciate that even with the odds stacked very much against me, many others had travelled that same road, and come out the other side, intact and able to live life.

The year that followed was horrific. Surgery...17 hours worth...a heart attack, a coma for two weeks. Radiotherapy, chemotherapy for months. sicker than I'd ever been in my entire life. Then physiotherapy, speech therapy, scans, tests, ad nauseum. Through it all, my "family" with the OCF was there for me every step of the way. Offering suggestions, encouragement, empathy. Strategies on overcoming some of the difficulties I had. There too, when one of our "family" lost their battle. We grieved together, we celebrated together...we were, and are "family". Some of my closest friends in the world are people I've met through OCF.

The Oral Cancer Foundation is a modest group of people helping one another deal with a common enemy. Together immeasurably stronger than each person indivudually. Their good work continues, and the demands increase, year after year. This organization has participated and played a hugely significant role in improving the survival rates for Oral Cancer around the world. I can think of no more worthy a cause than this.

My husband was diagnosed 3 times, with different oral cancers, first in 2002, another a couple years later, and a cancer on his lip in 2005. They were all undifferentiated, and contained, so he never had radiation or chemo, but instead, extensive surgeries removing a few teeth, jaw shaving, tissue, and some lymph nodes (that were not cancerous). He has had good check-ups since then. I am writing because he asked me to. The Oral Cancer Foundation and its forum were a God-send, with some of the most helpful, kind people you could ever hope for. It made a world of difference to talk to people who had experience with this disease, who could offer advice and comfort at a time when it was badly needed. I wish I could give the foundation more than 5 stars, because they truly have helped more people thru probably the worst times of their lives.

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The OCF is a vital connection for people who find themselves with the numbing news of having oral cancer. It is a lifeline to offer hope, advice, empathy, friends, and to answer the infinite questions, repeatedly, to those diagnosed. There have been invaluable friendships formed among people who have lived through the treatments together and have shared their experience with newcomers. There are truly some "angels" in the forum who have guided the members for years, putting in more time than a full time job, to assist folks through the process of getting to "the new normal". OCF is a Godsend.

If you want a forum which offers personal experience, empathy, advice, Care (with a capital C), kindness, and even the BEST recipes for recovering O.C. patients, The Oral Cancer Foundation is the place to be. These folks truly become family (sometimes even MORE understanding than family). We work together to combat this disease. Thank you Brian and Gary!

At the age of 46, I was diagnosed with HPV related oropharyngeal cancer, and I was stage 4. As a Dental Hygiienist, I had the background to be able to research this insidious disease, which helped to abate my fears. The Oral Cancer Foundation proved to be the most credible resource for me, by providing me with the most current studies, and information. I am so grateful for all the funding they are able to contribute to relevant studies, and the raising of awareness. Moving forward, now that I am over 3 years post-treatment, I send many newly diagnosed patients to the OCF website. I am so happy to be an advocate for raising awareness about this epidemic!

After being diagnosed with tongue cancer in 2005 I started searching the internet for additional sources of information on Oral Cancer. I was fortunate to find The Oral Cancer Foundation which proved to be the most comprehensive and informative website on the internet.

Not only does this organization provide hundreds of pages of information, it also has a forum for patients and care givers to share their stories and get personal support from those that have been there.

At the time of my diagnosis I was a practicing dentist. (I am now retired) Through the OCF I have developed life-Long relationships with other survivors all over the world and I have been able to share the knowledge I have gained from the OCF with others. To this day every year I lecture to a class of senior dental hygiene students as part of their program. I share my story with them and turn them on to the OCF for information that they will be able to use to save lives.

Previous Stories

Although I did not find the Oral Cancer Foundation until I was home recuperating from my tongue surgery, I have found it to be a way for me to expand my commitment to early detection of oral cancer. As a dentist and an oral cancer survivor, I have found myself in a very unique situation. Since joining the OCF in April of 2005, I have found a new meaning to the term "helping others".
The number of people from all walks of life that spend hours of their precious time helping others get through this dreadful disease, is boundless. My OCF "family" have allowed me to meet some of the most generous people in the world. From Brian Hill, the founder, to people in my own neighborhood and people around the world, the OCF forum provides a place for us to gather and help and support survivors, as well as family and friends of oral cancer patients.
Being a member of the OCF has spurred me on to be more pro-active in oral cancer awareness, than I ever was before. I have run 3 oral cancer screening events, written articles for local and national dental magazines, aimed at getting dentists to incorporate oral cancer screenings in their offices. I have been the top fund raiser for the OCF cancer walk in Harlem, NYC for the last 2 years. I will also be a speaker at a walk and fund raiser for the OCF this coming September. I try to get to the forum at least once a day looking for ways to use my background to help others.
Many people, even the members, are not aware of the vastness of the OCF website. There is no other site that comes close to having the content that the OCF website has. Just looking at the home page, www.oralcancerfoundation.org, and the list of links there, will give anyone an idea of how much content is available. The Oral Cancer Foundation website truly is the only place to go for the "answers to questions, advice, support and inspiration".

The Oral Cancer Foundation is an amazing small nonprofit with a worldwide presence. Helping oral cancer patients and caregivers all over the world with up to date, correct medical info and support on the online patient support forum sets The Oral Cancer Foundation apart from other online support groups. OCF's members truly care about each other and embrace new members immediately as one of their own. Nonprofit organizations cant get better than The Oral Cancer Foundation in all areas of helping others. I would give them a 10 star rating for everything they do to bring awareness of oral cancer, helping the general public with free screenings and funding research.

Previous Stories

The Oral Cancer Foundation helps oral cancer patients and caregivers during their darkest days. Invaluable and correct medical info and support is given to those in need. This small nonprofit makes a nationwide presence with campaigns to bring oral cancer screenings and awareness of oral cancer to the general public.

I LOVE, LOVE, LOVE the Oral Cancer Foundation!!! Its is a very small nonprofit that has a worldwide presence. The Oral Cancer Foundation provides factual medical info and support to help oral cancer patients and caregivers. When a newly diagnosed patient joins the online support group, they have found a new "family". Members embrace them and offer encouragement and support thru all their ups and downs. I couldnt think of another organization anywhere that cares for each member like The Oral Cancer Foundation does. Im proud to be a member and also a volunteer.

The Oral Cancer Foundation is THE BEST!!! It helps thousands of oral cancer patients and their caregivers each month. The public forum has hundreds of members who are always willing to help others. This organization is a great small nonprofit which helps so many.

The Oral Cancer Foundation is the BEST!!!! It is THE place to turn to for correct medical info and support when diagnosed with oral cancer. The main site is full of important info and news stories about oral cancer. The public forum is made up of volunteers who will help the patient thru diagnosis, treatment and recovery with correct medical info and moral support.

OCF has helped me tremendously. If it wasnt for Brian Hill and the Oral Cancer Foundation I probably wouldnt be here today. When I was diagnosed with my 3rd round of oral cancer and it was Stage IV, I almost gave up. Brian and the kind Oral Cancer Foundations members helped me to understand I had a shot and to not quit before I even tried. A huge THANK YOU to both Brian and his creation, OCF!!!

I have been a volunteer for OCF for the past few years since my recovery from my third round of oral cancer. This organization is run on a show string budget and does wonders with what it has. OCF funds research studies to help current and future oral cancer patients. This is one great non profit!!!!

The Oral Cancer Foundation is what pulled me thru my battle with oral cancer several years ago. I dont know where I'd be today without their guidance. Oral cancer is not a widely known disease. I never heard of it before I was diagnosed. The compassionate support members give other can not be replicated. This website helps oral cancer patients and caregivers from all over the world. I wish there were more websites that modeled this great organization. Two thumbs up!!!

Previous Stories

When I was first diagnosed with oral cancer I had no idea what it was. The Oral Cancer Foundation's members embraced me and taught me everything I needed to know along with providing me with the emotional support I needed. OCF is a small organization that provides worldwide support for oral cancer patients and caregivers. I consider OCF to be the very best nonprofit out there!!!!

The Oral Cancer Foundation is the very BEST small nonprofit organization!!! The OCF online patient support group helps patients and caregivers all over the world with up to date and correct medical info and support. This nonprofit establishment also helps fund many cutting edge research projects. For example, some are dedicated to furthering knowledge of HPV which is the fastest growing segment of newly diagnosed oral cancer patients. The Oral Cancer Foundation has created alliances with dental offices across the US to do thousands of free oral cancer screenings every April for Oral Cancer Awareness Month. This helps to find oral cancer early when its the easiest to treat.

My husband was diagnosed with tongue cancer in 2007. I literally don't know how we would have made it without the oral cancer foundation. We were lost as to how to proceed and the oral cancer foundation gave us the tools to navigate the choice of treatment. After treatment we turned to OCF for advice on nutrition and issues with swallowing and feeding. Because of radiation, my husband had to have his jaw replaced last year. The advice of OCF was instrumental in both of us surviving both physically and emotionally. I can't say enough good things about these incredible people. They deserve 50 stars as far as I'm concerned.Mary and John McCloskey

I was diagnosed with an HPV+ oral cancer that had to metastasized to one lymph node in March 2017. The Oral Cancer Foundation provides an outstanding *moderated* board by other cancer survivors.

Using the board I:- Selected a certified cancer center 4 miles from my house by late March 2017- Chose surgery + radiation rather than radiation + chemo by May 2017- Learned "best known methods" from previous patients - I did NOT need a feeding tube, I ate solid foods until my 6th week of radiation, and I did not have significant weight loss.- I had very little skin damage compared to most patients (for example, my skin did not peel despite 30 radiation treatments.) - Followed my speech and swallowing exercises to the letter and did not lose any range in how far I could open my mouth and had no loss of function in speaking.- Was able to get feedback on questions as they occurred.- Was given realistic expectations from former patients (e.g. taste loss, salivary gland function) that was glossed over by the doctors.

I highly recommend the Oral Cancer Foundation for anyone with oral cancer and their support.

The best thing about the non-profit is that they provide a moderated forum. This prevents information that is inaccurate or misleading from confusing you at a very difficult and confusing time at your life. OCF is the place I could count on to get quick and accurate answers to our questions during and after treatment.

There is absolutely no question about whether I would be here now if not for the Oral Cancer Foundation. I would not be. It is now 12 years since my first oral cancer diagnosis and not a single day goes by that I don't feel grateful to OCF for their support, the friendships made and the ongoing help that I know will instantly be there when I need it. That help may come in the form of high quality information with the latest techniques and information on procedures front and center, or it may be a shoulder to cry on in the patient and survivor forum. One never really 'gets over' oral cancer. We live with it every single day - in our speech - in our eating abilities (or inabilities) - in our relationships - and in the long term effects of some of our treatments. Not one day has ever gone by that I could say I was "over" oral cancer, and the Oral Caner Foundation has been there with me for every step of the way. My OCF name is "Pandora". I chose that because Pandora's box ended up with just one thing in it - HOPE. To me that was where I was at when I joined - HOPE. I continue to HOPE - for myself and all oral cancer warriors.

Previous Stories

In 2004 I was diagnosed with tongue cancer. This was a disease that NO ONE had ever heard of at the time - myself included. Yes, I was a smoker, and I was always fearful of lung cancer - but Oral Cancer?? Who had ever heard of that. I felt lost. Alone. The Oral Cancer Foundation became my source of information and comfort. There I met the most amazing people who knew of what I spoke.

When I was diagnosed with a recurrence in 2007, not one person on OCF gave me the sad "puppy dog eyes" or exhibited the "oh you poor thing" which went with said puppy dog eyes. They walked with me - helped me to find factual documentation and look at some care which perhaps wasn't the norm at the time. Due to my OCF Family's suggestions, I pushed for a second course of radiation and my Radiaiton Oncologist stretched protocols at the time to offer this.

Because of this double radiation I am here today. I just had my 5 1/2 year CT post treatment for my Second bout of Oral Cancer and I am 9 1/2 years past treatment for my First oral cancer. No question I would not be here without OCF.

While my cancer was likely due to the more traditional (old school) reasons for Oral Cancer - i.e smoking and drinking alcohol, I have come to be educated and extremely concerned about the rising rates of Oral Cancer due to HPV. This type of cancer appears to hit young people hard and it breaks my heart to think that they could have likely been cured - IF they had known to seek early detection; IF they had known Oral Cancer even existed.

OCF has work to do and it diligently doing anything and everything it can to spread the word. In order to do this - and save many young lives - they need our support.

The Oral Cancer Foundation is THE BEST Non Profit I have ever heard of. No questions about that.

Thank you OCF for my Life. Thanks to you, I fully expect to see my 60th Birthday in March 2014 :)

As an oral cancer patient (Stave IV twice) I have benefitted greatly from the information provided by the Oral Cancer Foundation. Without them, I would not have sought out a second course of radiation and as a result I would not be here today writing this review.

The Survivor - Patient Forum is second to none. The understanding, encouragement, genuine concern and care that I received from the uniquely selfless members of the OCF Forum is beyond anything anyone could hope for from an online forum. Posts and responses are timely, candid, innovative, helpful and occasionally humour. We truly have become the OCF Family and welcome all. I pray that I have able to help another patient who has reached out. We all do what we can and together we are awesome.

Brian Hill, Founder, once stated that while the Foundation requires increasing funding to meet its goals, he would rather have 100 one dollar donations with each of those 100 people learning about oral cancer - than having one person donate $100 - even if the other 99 might also donate. He was trying to clearly show how important the issue of spreading awareness is to the Foundation. If each one teaches one - those 100 people who had learned about oral cancer would grow exponentially and perhaps one day knowledge of this cancer and its early warning symptoms would be as common as the symptoms of the common cold. Questions like "You can GET cancer on your tongue?? will be as outdated as first 'suitcase' cell phones.

I don't remember the details of the day that I became a member of the Oral Cancer Foundation, but I do know it was one of the luckiest days of my life.

I would not be alive today without this Organizaiton. Through them, their fabulous knowledge of treatment options, I pressed for and received a second course of radiation with my 2nd cancer diagnosis. Had I just accepted anything else, I would not be here today. The awareness work this Foundation does is AMAZING. COMPLETELY AMAZING. They are almost single handedly spreading the word about Oral Cancer. To show how devoted this organization is to AWARENESS, I was once told that even if I didn't raise a cent for them - if my fundraising efforts included a message to make sure people get checked for oral cancer - whether they donate or not - they would be happy. The very fact that the word had spread was enough for them. DID I SAY AMAZING??

I found OCF in 2007 when I was diagnosed with cancer. They provided much needed information and additional support that was needed.OCF goes" above and beyond" what most other cancer related non-profits do for the cause. You can sign n 24 hrs a day and find answers and support from those who have been thru the same or similar treatment. OCF is there for anyone needing advice and support regardless of income or status.

This is a model non-profit organisation which helps oral cancer patients, survivors and caregivers throughout the United States and in the wider world. It has helped me through two occurrences of oral cancer and I hold the managers and moderators in the highest esteem. They give information but also the emotional support that is necessary for us when we go through this devastating disease.

Previous Stories

I found the Oral Cancer Foundation in 2009 after major tongue surgery and returned there this year after a recurrence, another surgery and radiotherapy. My life would be a lot harder if I didn't have the Patient Forum to call on when times get tough. Other patients and dedicated volunteers give advice and support about all manner of treatments, especially radiotherapy which can be particularly dire when directed at the head and neck.

I'm impressed by the overall philosophy and tone of the site. The Forum is beautifully moderated and newcomers are welcomed with sympathy and ready answers to their questions.

It's also heartwarming to feel a link to oral cancer patients all over the world. No one wants to join the oral cancer community but if your life takes this path, the Oral Cancer Foundation makes it so much more bearable.

I found the Oral Cancer Foundation near the end of my Husbands radiation/chemo treatment for his Base of Tongue cancer. How I wish I had found the site earlier. Such a wealth of Information . The Patient Forum was a god send. Such supportive and helpful advice on all manner of treatment and its side effects. I have given OCF's details to the ENT department at our hospital in New Zealand. I spoke to the Head &Neck cancer Nurse specialist too and really recommended that she look at OCF's site and that she pass on the details to all new Head&Neck cancer patients. The information is accurate and gives a great overview of treatment and what to expect. I found the support of other patients and their Caregivers incredibly helpful and supportive. This fabulous group got me through a recurrence too.When dealing with a cancer, online support and advice is what you need. I found it at the Oral Cancer Foundation .

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Just a fabulous site. When we got the diagnosis of base of tongue cancer we knew absolutely nothing about this type of cancer and how it was treated. . I literally learnt everything I needed to know from this site and from its Patients Forum. Far more information and practical help than we ever got from our Oncology team. The support from other Patients and Caregivers was essential to our progress and to my peace of mind.
I simply could not have got through without the support of the Oral Cancer Foundation.
4 years later I am still getting advice and support. I recommend this support site to all.

My husband was diagnosed with stage IV Base of Tongue cancer in December 2010. Unfortunately I did not find the oral cancer foundation's web site until he had almost completed his radiation/chemo treatment. How I wish I had found this site earlier to guide us through all the stages of diagnosis and treatment. The information on this site is accurate and up to date. I have found and continue to find the advice of fellow members on the patient forum to be invaluable. Just to know that others too have walked this path and are surviving is so important to me.Unfortunately my husband has had a reoccurrence but I continue to get advice and strength from the members of this site. We are doing well now, but I check in on a daily basis - it is a lifeline.

The OCF is THE online resource for head and neck cancers. I found them during recovery after surgery and radiation, joined immediately and was instantly embraced into a caring and helpful family. There is a wealth of information there and I know they sponsor research and work with patient outreach all over the country and even abroad. But what really sets the foundation apart are the people. I urge any H&N cancer sufferers and their loved ones to make use of this amazing place.

I found out about the Oral Cancer Foundation when my son was undergoing Radiation treatment for oral cancer. As I waited for my son to get back from his treatment, a young man sitting nearby came over to me and as he left for his own Radiation treatment, he smiled as he bent over and said to me, "Go to the Oral Cancer Foundation. They can help". I think often of this young man often and bless the day he led me to this wonderful organization. I don't know what we would have done without the kind and compassionate and knowledgeable help we received from everyone at the Oral Cancer Foundation. and all its volunteers throughout my son's treatment and beyond. In those early days of my son's recovery, I was online with the OCF many times throughout the day but no matter the time of day or night, there was always someone to help with never ending compassion and practical suggestions. They helped me over and over to help my son recover and to be strong for him. Day by day, I learned how to care for him and through the experience of others who were a little ahead of where my son was in his treatment, I was encouraged and was helped to learn what to expect at each stage. The research that this organization is part of is beyond amazing in what they have been able to do. I am so very grateful to Brian Hill, the founder for creating this tremendous organization.

Previous Stories

My son and I found the Oral Cancer Foundation almost 8 years ago when he was diagnosed with Squamous Cell Cancer. Without this organization I don't know what we would have done. We found all the latest information, plus the support and compassion from members who had direct experience with oral cancer. Over the years I've been amazed how this site continues to keep us informed about all the latest research and information on Oral Cancer as well as the technical improvements to the site which makes it even more perfect than it already was! My son is cancer-free now but does have long term issues as many patients do, so we continue to benefit and learn from all the developments and issues related to the effects of radiation treatment which he received. I am so very grateful to Brian Hill, the founder of OCF and to all the wonderful people who make this the great organization that it is.

When my son was first diagnosed with oral cancer, I was filled with anxiety and worry over what was happening to him. Searching online only frightened me more until I found the Oral Cancer Foundation soon after his surgery and just as he started Radiation Tx. Throughout his treatment, I found a wealth of of all the latest information, compassion, and practical advice but even more, I found hope, and this kept me going throughout the incredibly brutal treatment my son suffered through on his road to being "cancer-free". My son is now 7+ years cancer-free but I am still with the Oral Cancer Foundation, trying to give back a little of what we received. I continue learn and be amazed at everything that is going on with the latest research and all the great individuals who share their knowledge and support with others.

When I found the Oral Cancer Foundation, I was sitting in the Radiation waiting room, feeling alone and scared and worried about my son who was in the Radiation room, strapped down to a table with a mask holding his dead in position and receiving his Rad Tx. Another young man just my son's age was called to receive his treatment, but as he passed by where I was sitting, he bent over and whispered to me "Go to the Oralcancerfoundation.org. They will help". And they indeed helped my son and me in every way possible - with the most recent accurate information available, plus the compassionate support from other survivors, sharing their own experiences and giving us hope, helping us daily and often several times a day. That was 7 years ago and my son is now cancer-free! I will never forget the young man in the waiting room who led me to the Oral Cancer Foundation. I continue to stay with this great organization to try to give back to others, the compassionate support and hope that was given to us.

When my son Paul, aged 33, a non-smoker, was first diagnosed with Squamous Cell Cancer, I was so anxious, it took me three days after his diagnosis before I could bring myself to punch the words “Squamous Cell Cancer” on my laptop and everything I saw on the internet frightened me and left me more confused than ever. Somehow Paul got though surgery and had started his Radiation treatments. Then, one day as I sat in the Radiation room waiting and worrying about what was coming next, a young man sitting next to me, bent over and softly said to me, "Go to the OralCancerFoundation.org" - and that was the start of hope, knowledge, compassion and surviving cancer for my son and for me as his caregiver. At the Oral Cancer Foundation I found all the latest in accurate information, plus great suggestions from compassionate people who, with their knowledge and experience helped us every step of the way. I came to them many times every day and there was always someone there to listen, to offer helpful suggestions and to point me in the direction of accurate information no matter what time of day or night it was. That was more than six years ago and my son is doing just great, now. I still visit the Oral Cancer Foundation Site several times a day and try to pass on to other caregivers and survivors what I’ve learned from the Oral Cancer Foundation and to keep learning and increasing my own knowledge base in the fight against Oral Cancer so that some day we can make Oral Cancer history.

I found the Oral Cancer Foundation’s online forum while going through treatment. The wealth of information and support that is provided is priceless. The foundation’s mission is designed to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities. Coping with oral cancer can be complex. Not only is the patient dealing with a life-threatening disease, but also with changes in physical appearance, speech, the ability to swallow and eat, smell and taste. I firmly believe in spreading awareness and getting screened because getting screened can literally be the difference between life and death. I don't know what I would have done without OCF.

Over the years OCF has stayed at the head of the pack with new information and a most helpful forum. I have gained a lot of knowledge about head and neck cancers and have made a number of friends. It's so nice to know that many others care when I am in a time of need.

Previous Stories

Two years ago when my husband was diagnosed with base of tongue cancer, I was able to get all of the information I needed from the OCF website. I was able to ask doctors pertinent questions and raise questions about issues that the doctors had not thought to inform me about. Time and time again, the treating oncologists congratulated my husband on having a wife who kept on the "straight and narrow," -- something I could only do with the knowledge I got from OCF. My husband's cancer has since metastasized, it has been extremely helpful to me to know that I only have to reach out and the support is there for me on OCF.

My husband was recently diagnosed with base of tongue cancer. While his doctors and nurses have been extremely kind, there's no way they can spend the kind of time answering all my questions about the illness, treatment options and care-giving tips. I was lucky to find the Oral Cancer Foundation website where I can read about the experiences that others who have been through a similar experience and to learn from their insights. Coping with cancer is hard, but it is good to know that I am supported by a circle of friends who understand and care on the Oral Cancer Foundation website.

The Oral Cancer Foundation has helped me and my family with my fathers tongue cancer. The online message board has been a huge help in answering our questions and helping us to get my father thru some very dark times. I cant thank the dedicated volunteers enough for all the help they have given us this year. Other charities should be more like The Oral Cancer Foundation. They are the best of the best!!!